Ethical, Social and Regulatory Issues in Advanced Prenatal Testing. This project aims to investigate the social, ethical and regulatory issues arising with the rapid advancement and increased use of genomic non-invasive prenatal testing in early pregnancy in Australia. It expects to generate new insight into key issues such as consumer information before and after testing, consent, and equitable access to genomic health technologies in human reproduction. Expected outcomes include recommendation ....Ethical, Social and Regulatory Issues in Advanced Prenatal Testing. This project aims to investigate the social, ethical and regulatory issues arising with the rapid advancement and increased use of genomic non-invasive prenatal testing in early pregnancy in Australia. It expects to generate new insight into key issues such as consumer information before and after testing, consent, and equitable access to genomic health technologies in human reproduction. Expected outcomes include recommendations for addressing these issues, supported by ground-breaking social research and ethical and regulatory analysis. The project is expected to have major benefits, addressing the gap between policy and practice that has emerged in prenatal testing in Australia and shaping the ethics and regulation of pregnancy care.
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Can and should we link data at a national level? Vaccine safety surveillance: A case study. This project provides many benefits for the community, exploring the legal and ethical issues around consent for data linkage, convening Citizens' Juries to weigh the evidence and make recommendations. It addresses National Research Priorities: Promoting and Maintaining Good Health and Safeguarding Australia as well as National Collaborative Research Infrastructure Strategy priorities. It uses vaccine sa ....Can and should we link data at a national level? Vaccine safety surveillance: A case study. This project provides many benefits for the community, exploring the legal and ethical issues around consent for data linkage, convening Citizens' Juries to weigh the evidence and make recommendations. It addresses National Research Priorities: Promoting and Maintaining Good Health and Safeguarding Australia as well as National Collaborative Research Infrastructure Strategy priorities. It uses vaccine safety surveillance as a case study to evaluate the effectiveness of data linkage (through linking Commonwealth immunisation data to state hospital data) and the methodologies and lessons learnt from cross jurisdictional data linkage can be transferred to other areas. Read moreRead less
Regulating Autologous Stem Cell Therapies in Australia. This project aims to develop an ethical and regulatory framework for the use of autologous adult stem cell therapies in Australia. These therapies are increasingly being offered to patients for diseases and conditions that lack scientific evidence of safety and efficacy. This study aims to address this problem using a mixed methods approach to generate empirical data and theoretical, ethical and legal insights that will guide the responsibl ....Regulating Autologous Stem Cell Therapies in Australia. This project aims to develop an ethical and regulatory framework for the use of autologous adult stem cell therapies in Australia. These therapies are increasingly being offered to patients for diseases and conditions that lack scientific evidence of safety and efficacy. This study aims to address this problem using a mixed methods approach to generate empirical data and theoretical, ethical and legal insights that will guide the responsible development, translation and regulation of innovative stem cell therapies in Australia and internationally. Anticipated outcomes will improve patient advocacy and public knowledge about adult stem cell therapies, and facilitate better relationships between patients, researchers and clinicians.Read moreRead less
When informed consent goes poorly: A descriptive study of health care complaints and medical negligence claims. To correct process failures effectively, one must understand them. This project will improve knowledge of problems and disputes that arise when patients are 'consented' for medical treatment -- an enterprise in which thousands of Australians, many at very vulnerable stages of their lives, are engaged daily. Study findings will advance understanding of breakdowns in the informed conse ....When informed consent goes poorly: A descriptive study of health care complaints and medical negligence claims. To correct process failures effectively, one must understand them. This project will improve knowledge of problems and disputes that arise when patients are 'consented' for medical treatment -- an enterprise in which thousands of Australians, many at very vulnerable stages of their lives, are engaged daily. Study findings will advance understanding of breakdowns in the informed consent process and help shape strategies for reducing them. Our partner organisations are extraordinarily well-placed to carry insights from this work to health professionals in the field, enhancing opportunities for real benefits to patients from the research. The project fits with the national research priority of promoting and maintaining good health.Read moreRead less
On the cutting edge: promoting best practice in surgical innovation. Surgical innovation leads to beneficial healthcare outcomes, but frequently at an ethical, legal and regulatory cost. This project aims to address these challenges by developing conceptual tools and regulatory mechanisms which promote patient safety and support those who practice, manage and govern surgery.
Citizens' juries: enabling effective influenza pandemic policy through engagement with the community. The project will provide information and practical guidance to assist with South Australian pandemic management specifically and will have implications for the state and national disaster planning generally. The project will provide resources for both state and national policy makers in the form of technical reports and comprehensive public health information modules appropriate for disseminatio ....Citizens' juries: enabling effective influenza pandemic policy through engagement with the community. The project will provide information and practical guidance to assist with South Australian pandemic management specifically and will have implications for the state and national disaster planning generally. The project will provide resources for both state and national policy makers in the form of technical reports and comprehensive public health information modules appropriate for dissemination to the wider Australian community. The project will contribute to increased community awareness of pandemic influenza and enhanced community acceptance of (and cooperation with) pandemic management plans while establishing a mechanism for future pandemic and disaster policy planning and evaluation.Read moreRead less
Health, Freedom and Independent Contracting. The project will offer significant insights into the effects of independent contracts on the key area of rural health. The project will be able to gauge whether independent contracts offer significant improvements to the health and well being of those who use them, as well as the advantages to industry. In addition, the project will also consider the important ethical issue of whether independent contracts enhance the freedom of individual workers and ....Health, Freedom and Independent Contracting. The project will offer significant insights into the effects of independent contracts on the key area of rural health. The project will be able to gauge whether independent contracts offer significant improvements to the health and well being of those who use them, as well as the advantages to industry. In addition, the project will also consider the important ethical issue of whether independent contracts enhance the freedom of individual workers and in what ways.Read moreRead less
Framing Marginal Art: Developing an ethical, multi-dimensional framework for exhibiting art by people who experience mental illness and/or psychological trauma. This project develops an ethical, multi-dimensional framework for exhibiting creative works by people who experience mental illness and/or psychological trauma. Providing such a framework will enable these works to be exhibited ethically, which will serve the public interest by enhancing the contribution of creative programs to individua ....Framing Marginal Art: Developing an ethical, multi-dimensional framework for exhibiting art by people who experience mental illness and/or psychological trauma. This project develops an ethical, multi-dimensional framework for exhibiting creative works by people who experience mental illness and/or psychological trauma. Providing such a framework will enable these works to be exhibited ethically, which will serve the public interest by enhancing the contribution of creative programs to individual and social well-being. Furthermore, by educating the public about mental ill-health it lessens stigma and encourages those affected by illness to seek early, preventive treatment. This project, which leads to better understanding of illnesses that affect one-fifth of the population in their lifetime, will create better health outcomes for significant numbers of Australians.Read moreRead less
Assessing development: designing better indices of poverty and gender equity. Contributing to development worldwide, this research raises Australia`s global standing and helps fulfil the values and responsibilities of the Australian people. It strengthens the basis for gender-related and poverty-related policy development and service delivery within Australia and helps correct the current over-emphasis, in measuring domestic gender inequity, on the more privileged women.
Because severe poverty ....Assessing development: designing better indices of poverty and gender equity. Contributing to development worldwide, this research raises Australia`s global standing and helps fulfil the values and responsibilities of the Australian people. It strengthens the basis for gender-related and poverty-related policy development and service delivery within Australia and helps correct the current over-emphasis, in measuring domestic gender inequity, on the more privileged women.
Because severe poverty and radically unequal gender relations burden many of our South East Asian and Pacific neighbours, development aid remains an important plank of our foreign policy. By providing better tools for measuring poverty and gender inequity, this project can improve our understanding of our region and augment the impact of our aid.Read moreRead less